I started this Blog after being diagnosed with Prostate Cancer in 2010. It was a way of keeping family and friends informed. It then became a campaigning tool helping to make improvements in hospitals nationally. In 2013 we moved to Johannesburg, setting up our own e-education company. Now we have moved to Bangkok, a great base to explore SE Asia. After surgery 7 years ago my PSA remains at zero, the cancer is still undetectable, and I remain thankful.

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Monday, 13 June 2011

I know how important this Blog is to me now! I have just come back from the local radio station and my head is spinning; so much flying around in there that I just had to come upstairs, sit down and put my thoughts on virtual paper. It was this that helped me through the darker days when I was first diagnosed. Being dyspraxic, I find it fairly difficult to sort information in my head, but if I can write it all down and then sort it out, things start to settle and I feel less stressed.

I have never experienced a weekend like the one that's just gone. On Friday my story was front page on the local paper, but nothing could have prepared me for the aftermath of the full page article in the Daily Mail on Saturday. I have had support from around the world!

There were 60 comments on the article, 59 in my favour. Thousands of people ticked to say that they agreed with the comments of the 59. I see that as a clear vote of support in a public arena, for what I am doing.

I was contacted, both on the Blog and via e mail by NHS staff from around the country and some who are working at the Cumberland Infirmary. 100% in support that what I am saying is true. I was contacted by a senior member of a complaints section in another Trust, expressing 'disbelief' that a cancer patient who was trying to improve his local hospital could be threatened with the law.

It is worth repeating that the Cumberland Infirmary is full of the kindest most dedicated staff that you could wish to meet. Doctors, Nurses and others doing an amazing job every day of the week. But it's no use having a body with perfect organs if it has a faulty nervous system, and that is the problem.

After they threatened me with legal action, I started to doubt myself, but the public response to my claims has been mind-blowing. I even talked to a guy who is now living out his last days in the Philippines because of the NHS lack of response to his Prostate Cancer. I cried when I read his e mail and if he's reading this Blog still, I want him to know that I am not going to stop with this, I'm doing it for you and others in your position who were let down by the system, not the people in it.

When I was at Addenbrookes last week, I asked if they could help my hospital to get better at what they do. The answer was "yes", they would be happy to have a team from the Cumberland Infirmary visit to learn. But they also pointed out that they also visited other hospitals to learn because, "we should never stop learning". If the Trust call me, I will give them the number of the lady at Addenbrookes who could help them.

I suppose that when a hospital carries the burden of such a large PR system and pays vast amounts of money in legal fees, someone has to suffer. Our group has asked, under the Freedom of Information Act, for the Trust to reveal this expenditure.

When doctors and nurses get tired because they just can't cope with the workload, mistakes can happen, papers can get lost and patients forgotten. This can lead to people suing the hospital and bad publicity which requires large amounts of money to be poured into areas that do not help sick people. The more money that's deflected like this the worse things get and the more the hospital spends on PR to make the public think that there is not a problem. I suppose taken to its ridiculous extreme you could end up with one doctor and one nurse trying to treat everyone in Cumbria, whilst half the population of Carlisle were employed by a PR firm spending millions on convincing the public that all was OK. Anyone who was not convinced would be sued into keeping their mouth shut by the other half of the population who were all solicitors.

Well, I'm sure today will bring more light to this, though I can't say I'm looking forward to being on TV later. Better go and change my shirt!

1 comment:

Just saw your story on Look North. I find it very surprising that an institution that is aimed at HELPING people would act out in this way. By taking this action they have taken a story that might have reached a few people on your blog to a national and featured regional story. The mind boggles. Thanks for sharing your story like this. Even though I am not a sufferer myself I have lost people to the disease and admire anyone and everyone who has fought that battle. Continue the fight and you have my support.